His father’s suffering had already been too great

He looked dead. The paramedics brought him down the hall toward one of my critical care beds, and for a moment I thought the patient was dead. He was nearly the same color as the pale sheet covering his thin frame. His cheeks were sunken in and his eyes were gazing upward, in what I sometimes call the “death stare.” Then, surprisingly, he moved his arm upward to push his oxygen mask off of his face, resting it atop his head like one would wear a pair of glasses not in use.

“You may want to come in here,” said Tina, the veteran nurse of the night shift, who motioned me in the room with her– not so much as an invitation but as a direction.

“Hmm,” I said entering the room beside her, as I looked at his body: pale skin, spindly legs, swollen scrotum, and pumping belly. His belly was pumping up and down because his whole torso was in overdrive- with his belly muscles acting as a bellows to suck air into and out of his failing lungs.

“Where did he come from?” I asked the paramedics.

“Home, but he was just discharged from the hospital this morning.” The medic responded.

I raised both of my eyebrows and then lowered one. This was correctly interpreted by the paramedic as an expression meaning, “Excuse me? How could he be dying and discharged from the hospital only to arrive back in the ER on the same day… I need more information.”

He responded with the data I was seeking, “Mr. Harris, here, is 48 years old, has been paraplegic (paralyzed from the waist down) for 12 years after a car wreck broke his back. He was in the hospital with an infection for two weeks. Today, against the wishes of the doctors, checked himself out and his family took him home.”

“After he got home, his son said he could hardly breathe, so the son called 911. When we got there his oxygen level was very low (57%), so we put an oxygen mask on him and brought him back.”

My eyebrows relaxed as he talked, as I now understood the situation, at least partially.

“Didn’t they send him home on hospice or home-health? Who is taking care of him? Does he live with his son?” As I rapid-fire questioned the paramedic, I noticed a slightly panicked look and fine beads of sweat forming on his forehead. He didn’t know any more than I did. Realizing this, I showed some mercy.

“Thanks man, I’ve got it from here,” and I gave him a pat on the shoulder. Visibly relieved, he left the room.

Tina and I got to work on our new patient. She put an IV in while I talked to him.

“Mr. Harris,” I said leaning over the stretcher near his head, “can you see me?”

He closed his eyes in response, a submissive gesture, as if to say, “Do what every you want, Doc.”

As I moved my stethoscope toward his chest, I noticed the old scar of a tracheostomy in his lower neck. I touched it gently and observed aloud, “You were on a ventilator for a long time after your car accident weren’t you, Mr. Harris?”

He opened his eyes and furrowed his brow in to a deep frown. Lifting his head off the bed he nodded slowly up and down while he came up to look me directly in the eyes. No words were necessary. I could see all that I needed to hear in his penetrating gaze. What he was explaining to me in that moment is nothing another human being can fathom save that they have experienced it for themselves. Prolonged artificial ventilation can be painful, even torturous.

I held his gaze as I placed my stethoscope on his right upper chest, then his right lower chest, and then I moved across his body to the left side. Everywhere I listened the sounds were ominously the same. The sounds of pneumonia crackled in every portion of his chest, every single lobe of his lungs. No wonder his belly had pitched in to help out.

“Oh dear,” I said in my mind as I removed the stethoscope from my ears. I stood up straight and looked at the oxygen monitor above us which remained low despite the oxygen mask on his face. I looked back down to Mr. Harris whose gaze had never left my face, and I held his hand.

“Mr. Harris,” I said, stating the obvious. “You are in critical shape. You have developed a bad pneumonia and your lungs are failing. Maybe we should put you on a ventilator …”

I had no more gotten the first syllable of the word ‘ventilator’ out of my mouth, when he began to shake his side to side and mouth the word “No!”

I leaned down toward him again, “I know you have been on one before and it was uncomfortable. But, if we choose not to use a ventilator it could mean that you will die. Do you understand this choice?”

Up and down he vigorously shook his head while staring me straight in the eyes, no less intensely than before.

I went on to explain other therapy options and to my great surprise, he refused them all except the oxygen mask that I had repositioned on his face.

I paused and glanced down the length of his body which bore the scars and signs of many years of illness and debility. A tracheostomy scar in his neck, old IV sites, a permanent urinary catheter exiting the tip of his penis. His legs, tiny and limp, lay spread out on the bed as they had for the last 12 years, lying in whatever position they had fallen. There were sores scattered along them, caused from the pressure of lying in the same place for too long. His body was like a war memorial, with markers for battles waged and won, until now.

I looked back into Mr. Harris’ eyes, haggard but determined. We both knew that he was done fighting. Now, I shook my head, “Yes, I believe that I understand your wishes, Mr. Harris.”

Back outside of the room, his son arrived. We sat in a quiet corner to talk. “Your dad has a severe pneumonia, it’s in every part of his lungs. I can hear it with my stethoscope and I see it on his x-ray. I have talked with him and he doesn’t want to be on a breathing machine…”

Before I could finish my words, the son interrupted in distress, “He HAS to be put on a breathing machine!”

Leaning forward I tried to calm him, “I am so sorry, but it is his choice to make, not ours.”

He pulled the corner of his jacket over his eyes to hide his tears. From behind the jacket he asked chokingly, “Will he die without it? Without the breathing machine?”

“Yes. I’m sorry, I think so; but the pneumonia is so bad that I think he would even die with it. What I am saying is that I think he is dying no matter what we do,” I paused respectfully as his sobs grew louder. Softly, I explained, “He has suffered for many years. Of any patient I’ve ever had, your dad knows first-hand what it’s like to be on a ventilator, what it’s like to be on artificial life support … and to be on it for a long time.”

His sobbing intensified and he pulled his jacket up to cover his entire head and leaned forward to rest his face in his lap. “He can’t leave me. He needs to be on the ventilator.” I heard him repeat the same words in muffled and broken tones.

All I could offer was touch. I placed my hand gently on his back. With this touch, he released the jacket and sat up, “I need to see him, please.”

We walked to Mr. Harris’ room and I stood by without saying a word.

“Come on, Daddy, let them put you on the ventilator…please,” he begged. “Please don’t leave me alone.” He cried against his father’s cheek. Slowly, his dad reached up a weakened hand to cradle his son’s head. The son’s tears flowed over his father’s oxygen mask. A few dripped from his chin, pooling in his father’s tracheostomy scar at the base of his neck.

My heart broke. I felt my eyes grow full and tears escape down my own cheeks. I felt so torn for this family. I could sense the deep agony of both men, the son in his need to keep his father with him and the fathers love for his son warring with his readiness to leave his physical suffering behind.

I thought that I should call for the respiratory therapist. I was sure Mr. Harris would relinquish his will for his son’s great agony and love. I felt sure that he would agree to be intubated … but he did not.

“No son,” Mr. Harris mouthed. “I’m done.”

I turned from the scene. The pain was too great, the choice too hard for me to face directly.

As a parent and a child, I could imagine myself as both Mr. Harris and his son:

“How could Mr. Harris not fight just one more time for his child’s sake?”

“How could the son not understand that his father’s suffering had already been too great?”

Yet, this choice was neither mine, nor the son’s. It was Mr. Harris’ alone.

Later, estranged family arrived to the emergency department to see Mr. Harris as he began to die. Hugs were exchanged among longtime rivals. Walking together to and from Mr. Harris’ room, injured relationships were healed. Peace blossomed—one of the great gifts available at the end of life.

The son came out of the room to find me, his eyes swollen and red, but his demeanor calmed. “He wants to take off his oxygen mask to try to talk to us. And, he wants some ice chips and something for pain.”

“Yes, of course.” I was surprised at the son’s ability to deliver the request.

The order was filled. Then, I spent time explaining the plan to the admitting doctor and made arrangements for comfort care measures.

Afterward, I walked by the room to leave, my shift long over. I stepped in to say “goodbye.” Mr. Harris had pushed his oxygen mask back up to rest on top of his head again, like he might have with a pair of sunglasses. His skin was paler, and now blue-hued from his lowering oxygen levels. The pumping piston motion of his chest and abdomen was slowing. Despite all this, his gaze met mine. I nodded my head and so did he.

Monica Williams-Murphy is an emergency physician and author of It’s OK to Die.

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Comfort Care. That is what my husband received with advanced P.A.D.. He had a disection of the aorta and surgery was out of the question. Bless the Doctor and the staff that helped him and me and the rest of the family through his passing. I hope, should my passing need the same I have such a wonderful team to help me. God Bless…..

Marielaina Perrone

Great work. Good to see this type of care.

markbesser

Could he have been made comfortable on a ventilator with medication?

Ann Schrooten

“What he was explaining to me in that moment is nothing another human being can fathom save that they have experienced it for themselves. Prolonged artificial ventilation can be painful, even torturous.”Interesting perspective. My son has a rare form of muscular dystrophy and has been ventilator dependent since he was four months old. He is now 13 years old. I was never told by the medical profession that artificial ventilation is painful and my son is happy and doesn’t appear to be tortured by being on a ventilator. I know many other families of children/young adults on vents due to neuromuscular diseases, CCHS and various other conditions and our kids are all happy and doing well. I think for individuals who were healthy before the accident or event that put them on the ventilator, the torturous part has less to do with being vented and more to do with what has been lost – the freedom of choice and ability to control one’s own body. I just think it’s important for you to know that being on a ventilator long term does not automatically equal a painful life not worth living. Obviously, I’m talking about individuals who are trached and vented. Being intubated and vented would definitely be painful and tortuous.

Susan Czarnecki

Being intubated and on a ventilator is a totally different experience. Awaking from sedation, waiting for someone to pay attention to the alarms,(ICU personnel become immune to them), waiting for them to find “your” nurse, waiting for them to check your orders, can seem and often is a very painful, never-ending time for everyone in the room.

Ann Schrooten

Yes, I acknowedged that.

Susan Czarnecki

Great care given here. Blessings to all involved. You are a Physician. Comforting to know you are in the world.

parsleyrn

Wonderful story.. Thank you for being strong enough to stand up for your patient and soft enough to feel the pain of both your patient and his family. How wonderful it is that this turned into a time of healing for all involved.